Treatments top specialists are using

I've heard some comments lately suggesting that there is no consistency in treatment among ME/CFS specialists. That is not in keeping with what I'm hearing from the patients of those physicians, so I thought it might be worth seeing what kinds of treatment people are getting from the top specialists to see if there's a general pattern, or if it's all over the map, as some people suggest.

It's important to understand when considering the results of this exercise that even patients with unambiguous ME/CFS don't have identical symptoms, so symptomatic treatment is certain to vary among patients. I'm not expecting to see only one or two treatments here, or that every patient gets the same treatment. I'm just wondering if we can see an overall pattern, or some consistency.

Please respond here only if you are seeing one of the following doctors -- Peterson, Montoya (or any associated clinician), Klimas/Rey/Vera (or any clinican at INIM), Kogelnik/Kaufman (or any clinician at OMI), Lerner, DeMeirleir, Levine,or Chia. Let me know if I've missed a topME/CFS clinician (or clinical group) on this list. I'm sure I've missed some.

Also please only list treatments your specialist prescribed or recommended, not anything you choose to take on your own even if your specialist says it's okay.

I'll start.

My daughter or I have, at one time or another, received the following treatments from specialists on the above list:Pathogen Treatments
Valtrex
Valcyte
Azithromycin
Equilibrant

I'm a patient of KDM, and my treatment so far has mainly consisted of antibiotics for the Yersinia Enterocolitica infection he diagnosed me with.

I think most of the top doctors use the same treatments for the same problems, since most of the time they are on-label uses, it's just that they seem to differ on which problems are the underlying ones, and therefore each doctor pays more attention than the others to a particular aspect of the disease.

@leokitten -you are not far from me. I am outside of Philly. I see a good physician in PA. He is just as good as Levine. Does Levine give you a lot of time? It seems like she is spending some quality time with you...she has you on a lot.

I am hoping it is going well. I love my doc, but have been to Levine in the past. Many of my NY friends go to Levine.

@leokitten -you are not far from me. I am outside of Philly. I see a good physician in PA. He is just as good as Levine. Does Levine give you a lot of time? It seems like she is spending some quality time with you...she has you on a lot.

I am hoping it is going well. I love my doc, but have been to Levine in the past. Many of my NY friends go to Levine.

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When I see her in person she gives me a lot of time, phone consults are shorter.

From moment one I told her I didn't want to lose the ability to work so we started aggressively, for the first 6-8 months or so I had a lot more negative reactions to meds since my illness and symptoms were far worse but I stuck through it and as the illness stabilized the med sensitivities went away and we were able to continue to layer on more meds. Plus I do periodic CMP and CBC w/diff to make sure everything is ok with handling the meds.

She spent a good amount of time with me in the beginning (5/2013) and followed-up often with phone appointments and close monitoring of labs. Quite honestly, I don't need a lot of time with her any more, I just see her every 4 months of so so she will keep writing my prescriptions.

She accepts my insurance and over the 2+ years I've been seeing her I have paid her $0.00.

She is also very up to date with pretty much everything going on with MECFS including chairing CFSAC (a thankless job), working with the Chronic Fatigue Initiative, in contact with Lipkin/Hornig and Montoya etc.

I have improved slowly but steadily after seeing her when I crashed 1 year into my onset of MECFS and am able to continue working full time (mostly from home) and have a little bit of energy now to do some of my favorite things.

What I have received so far:

Pathogen Treatments

Valcyte- did 1 year

Valtrex- on it over 1 year

OI Treatments
She ordered a tilt table test, which was inconclusive. She's given me the names of specialist I can see but my OI has improved as my overall status has improved and since I have more of an issue with hypertension and I've had a bad experience with beta blockers prior to seeing Dr. Levine, I'm not doing anything specific for OI right now.

Endocrine Treatments
Upon seeing I had Hashimotos, Dr. Levine ordered a thyroid U/S which showed a suspicious nodule that led to partial thyroidectomy which led to finding papillary thyroid CA. I f/u with and endocrinologist for that- but I think he'd like to fire me as a patient since I keep putting off getting the rest of my thyroid out and the Hashi's has destroyed my remaining thyroid to they point that they can't monitor it by U/S. The endo prescribes Synthroid.

Sleep Treatments

Trazodone-worked for 2 weeks, so I stopped it

Mirtazapine-worked for 3 weeks, so I stopped it

Zolpidem-works like a charm night after night and if I had to pick 1 thing that makes the biggest impact in my symptoms and function--it would be this. I thank god that Dr. Levine is willing to do the pre-auths for my insurance company because no other Dr. would do this for me.

She also wrote (on my request) prescriptions for Belsomra (not covered by insurance) and Rozerm (requires pre-auth) but I haven't tried to fill them because of insurance reasons.

Immune Treatments
I'm already taking inosine

Other

LDN

Celebrex (Pridgen study) I took it for about 6 months and felt no impact so I stopped due to the black box warning.

I did the Synergy trial through Dr. Levine- I think I was in the placebo group, but after the study she prescribed Ritalin and I got a free supply of K-Pax. Neither did anything bad or good so I stopped them.

If you want Ampligen or Rituxan she wouldn't be the way to go but otherwise, I think she's pretty much doing what most of the other top specialists are doing with the exception of Dr. Chia and KDM who seem to have a different approach.

Montoya's clinic at stanford
I have seen him 2x and his other folks a couple times.. lost a year of follow ups from other health issues taking precedence.
Treatment.. he started me on acyclovir 800mg 3x a day. ( my local dr had me try valcyte shortly before seeing Montoya and i didn't do well with it) - I seemed to have stopped treatment a couple years ago- last visit they were suggesting Valtrex, which i didnt do well with either-. so i asked for famvir- i am not sure if i will proceed with the famvir or the acyclovir at this point, in past years with the acyclovir i had lower igg's for EBV.
last visit with his assistant she mentioned trying LDN. and also mentioned they are seeing better success in folks taking anit inflammatory meds along with the antivirals. If this help s i will attach this PDF update from stanford.

She spent a good amount of time with me in the beginning (5/2013) and followed-up often with phone appointments and close monitoring of labs. Quite honestly, I don't need a lot of time with her any more, I just see her every 4 months of so so she will keep writing my prescriptions.

She accepts my insurance and over the 2+ years I've been seeing her I have paid her $0.00.

She is also very up to date with pretty much everything going on with MECFS including chairing CFSAC (a thankless job), working with the Chronic Fatigue Initiative, in contact with Lipkin/Hornig and Montoya etc.

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Thanks for mentioning this @catly, this is exactly what is so wonderful about Dr. Levine. If I'm not mistaken I think she is one of the few top ME/CFS clinicians that works with insurance, and she's not in the business of constantly pushing for alternative treatments to make money. I too in the almost 2 years I've been seeing her have paid absolutely nothing. She's not in it for the money but only to help us and that's more than can be said for a lot of ME/CFS doctors. She keeps abreast with all the latest treatments and most importantly she is willing to try things empirically which is very important for this disease.

Hi, well as you can see form my post most of the things that have been prescribed have not been tolerated as I have developed Mast Cell activation so most drugs, herbals and some foods cause reactions....

So far I have only had two weeks of the IV Glutathione and IV myers 3 times a week - this feels like it has reduced inflammation a little, but to be fair because I am staying away from home I am also doing way less activity. Pain is reduced and im sure this is from the Glutathione.